Archive for the ‘End-of-Life care’ Category

The Wall Street Journal had a February 19th front-page article on how much Hospice is costing Medicare with the emphasis being on those patients who go into home-based Hospice care and stay there for prolonged periods. While many of that group have Alzheimer's or other dementing diseases, others have chronic obstructive pulmonary disease (COPD, e.g., emphysema), heart failure or cancer. The average time spent on Hospice in 2013 alone was 93.2 days for people with Alzheimer's and similar dementias and they consumed 22% of the total Medicare spent on End-of-life (EOL) care that year.

The statistics in the article were striking: over an eight-year period (2005-2013) 107,000 patients had been on Hospice for much longer, close to a thousand days. That's a very small subset of all those who had sought out Hospice care during that timeframe, 1.3%, but that relatively small number of patients cost Medicare a huge amount, 14% of its total dollars spent on Hospice in that timeframe.

The program itself was originally set up for those whose physicians could certify were terminal, within six months of dying. The overall Medicare Hospice expense total in 2013 was roughly $15 billion and the WSJ's data references a study stating that that care, at least for those who did not have cancer, actually cost Medicare 19% more than for similar patients who did not seek out Hospice care.

That's especially true for those who have dementia, but other chronic conditions (where the time to death is less predictable than it often is for patients with cancer) clearly play a role also.

As I was not surprised there's often another side of the picture. I have had two examples in my extended family; one involving Paul, my son-in-law and the other Lynnette, my wife. My son-in-law's father had Lyme disease with significant brain involvement. He went from being a distinguished systems engineer to needing help with many of the activities of daily life. It was a long time before his family was able to get him on home Hospice; when they finally did, my son-in-law said to me, "it was the difference between day and night." The family really appreciated the care given to him during his final weeks.

Recently my wife had a major stroke and lived one week, one hour and seven minutes after the onset of the bleed into her brain. I had seen her stumble in our bedroom, realized she was unable to get up, carried her to our bed and called 911. We went from ambulance to a local hospital where CT scanner which showed a considerable area of bleeding in her brain. She was immediately moved to a bigger hospital where a neurosurgeon was available. He ordered a second CT scan which showed even more bleeding. All the things he could do would come with consequences she had always said she would not want to live with.

I was her health care surrogate and carried out her oft-expressed wishes, rejecting the surgery, so she went, several days later, to Hospice at a third hospital. The care there was exemplary, but this was clearly to be short-term, inpatient Hospice.

So when I read the WSJ article, I did so with a jaundiced eye, not from the viewpoint of a physician or a taxpayer, but from that of a family member who had experienced the positive side of Hospice.

The issue for me, as it was for my wife, is quality of life. That's a hard subject for many of us to discuss, but I think it's crucial. We had had those talks repeatedly over the past five or six years and both of us knew what the other wanted.

I don't have answer for others, but I urge you to think about the subject, talk about it with your spouse, significant other and children, whoever might be asked to make a choice for you if you are unable to make it yourself.

There was the other aspect we hadn't fully explored. Neither my daughter, who would have been the one to make choices for me if my wife was unable to do so, or a nephew, who would have been my wife's secondary decision maker, had been party to our discussions.

So what would have happened if Lynn and I had been in a car crash, had both been severely injured and our alternate health care surrogates had to make those tough choices?

I don't know the answer, but it's clear to me now that EOL discussions should involve more than you and your spouse or significant other.

It's also clear that neither Lynn nor I would have wanted prolonged home Hospice, but would have (I did at least) really appreciated its availability for relatively short-term care, whether in our home or, as it turned out in a hospital setting. You may or may not feel the same way.

Please think of having those talks now with whomever in your family might be called upon to choose for you.

I've been deluged by two recent deaths and a number of severe illnesses among elderly (70+) friends and acquaintances and so was particularly interested in an article in JAMA that arrived today with the title "Change in End-of-Life Care for Medicare Beneficiaries." The study looked at the site where people died (home, hospital, hospice) and what type of medical care they received in the last 90 days of their lives.

An ICU may not be your first choice of where to end your days

The accompanying editorial piece, written by two Yale physicians, summarized the data well: among this large group of Medicare patients (848,303) dying in 2000, 2005, or 2009, more died in hospice care or at home in the later time frame, but ICU stays and acute care hospitalizations actually increased. In reality, hospice care, although more available and better recognized, frequently seems to be used only in the last few days of life.

This pattern of hospitalization and re-hospitalization holds true for those with other diseases and illnesses. A 2009 New England Journal of Medicine article looked at readmissions among nearly 12 million fee-for-service Medicare patients reviewing data from the 2003-2004 time frame. A startling 19.6% of those Medicare beneficiaries who had been hospitalized, then discharged, were back in the inpatient setting within thirty days and over a third (34%) within ninety days. The estimated cost to Medicare of the total of these "bounce back" hospital stays was $17.4 billion in 2004.

A 2011 study reviewed the medical histories of nursing home patients who were hospitalized, often repeatedly. In 2012 MedPAC, the Medicare Payment Advisory Commission, recommended "reducing payments to skilled nursing facilities (SNFs) with relatively high rates of re-hospitalizations." In 2006 the cost of early re-admissions from SNFs (within the first 30 days after hospital discharge) was $4.34 billion.

That's the cost in terms of money, but the impact in terms of quality of life costs to patients can't be estimated easily, but is huge. So let's go back to the original JAMA article and editorial and its references.

One of the striking finding was the percentage of patients with diagnoses of dementia who actually spent some of their last days in an ICU setting. I woud have thought this figure should have fallen over the past years, but in reality, as Drs Jenq and Tinetti's editorial points out, it actually increased (18.6% in 2000 and 21.8% in 2009). If I'm demented in my last days on this earth, please don't waste precious ICU space on me!

The Yale reviewers comment that we need to set criteria for ICU admissions (as we already do for other health-care settings) makes eminent sense, Not only do we waste highly needed bed space and lots of money, potentially depriving other critically ill (and potentially recoverable) patients of the opportunity to receive the highest level of care available, in doing so we may block those, like me, who wish to die at home or in hospice, of that option...at least until the last three days.

In the article by Teno et. al., forty percent of those with COPD had an ICU stay prior to death and an equal percentage of those referred to hospice within three days of dying came there from an ICU.

At home, with your grandchild's hands on yours, may be a much better choice.

How do we change the current picture, so that surrounded by family and perhaps even in our own bed, more of us can face the end in the relative comfort of home or with the aid of hospice?

I don't have an easy answer, but I think it's time for a national dialogue on the subject.

As things are now, I think we're avoiding coming to grips with an issue we should face up to; our health care system can't afford the costs involved and our own wishes and those of our loved ones need to be expressed in advance.

It's hard to make decisions at the last moment, so let's think about them in advance, individually, with our families and as a nation.

About two months ago I visited a friend in the hospital. He's a little over 80 years old, has several significant chronic medical problems and had recently undergone surgery. When I arrived in his room, he was in bed, didn't recognize me and then sat up and started rowing. Obviously he was delirious and hallucinating.

I've seen him at home since and he's back to baseline, but the topic of post-surgery delirium surfaced in the July 4, 2012 issue of JAMA, so I started reading on the subject.

I found an article in a 2004 issue of the American Journal of Psychiatry (AJP) that was a good start, but was clearly aimed at medical folk, especially those who would be prescribing medication for the mostly severely affected patients with delirium. The AJP piece said the first step is determining the cause...if possible. It mentioned that the word itself comes from the Latin word delirare, loosely translated as "to be out of one's furrow." My online dictionary defines delirium as an acute (as opposed to chronic) disturbed state of mind that occurs in fever, intoxication, and other disorders and is characterized by restlessness, illusions, and incoherence of thought and speech.

The most recent mental health Diagnostic and Statistical Manual of Mental Disorders, DSM-IV-TR, a much-used but somewhat controversial tome (I'll write about the DSM in a later post), says delirium is a syndrome (a collection of symptoms and physical signs) of many different causes and that its major features are confusion and loss of short-term memory. It mentions one classic sign, not seen in all cases by any means, is carpologia, a term I'd never heard before, but a behavior I've seen many times; it means picking at the bed sheets in a purposeless, repetitive fashion. The patient may be agitated, have delusions and hallucinations, and may try to remove their IV lines or climb out of bed.

On the other hand, some people have a lethargic, hypoactive form of the syndrome; those may be even tougher to diagnose.

A Mayo Clinic website mentions one hallmark of delirium is a sudden or relatively sudden onset with symptoms that tend to wax and wane. Input from family members as to the patient's pre-illness/surgery mental status may be very helpful in sorting out those who had pre-existing dementia from those who didn't, as the two conditions not infrequently co-exist.

too much alcohol can lead to delirium

It's not just surgical patients, of course; when I was in practice the term internists used was "ICU-itis, and medical patients, especially the elderly who were in Intensive Care for a prolonged period, were the ones we had to deal with most commonly. So a better term might be hospital-induced delirium. But some delirious patients have ingested substances causing the condition (PCP would be one example and alcohol withdrawal another), have heavy metal poisoning, medication-caused delirium, infections involving the central nervous system or metabolic disorders.

It's common, but much more so in older patients and a 2010 meta-analysis of forty-two high-quality studies concluded that delirium in this group is associated with poor outcomes, regardless of age, gender, preceding dementia, and other illnesses.

I'll come back to this frequent and often ominous issue in my next post. As our population ages, we'll likely see more of this condition. Planning in advance for hospital stays may help prevent some episodes of delirium.

We've had a relative and a friend who each had Hospice care, one in another state and one locally. Both their spouses thought that Hospice was wonderful and wondered why they had to wait so long before their loved one was eligible for it. So when the Annals of Internal Medicine for February arrived, I decided to read an article titled "End-of-Life Care Discussions Among Patients with Advanced Cancer" and the section called "In the Clinic" which this month was on Palliative Care.

I knew that Hospice is for patents in their last six months of life. More than three quarters of them have at least one of four diagnoses: congestive heart failure, kidney failure, dementia or chronic obstructive pulmonary disease (emphysema). They have no life-saving avenues left and are normally not in a hospital setting. Some prefer to die at home and some are in long-term care facilities. We have a local organization, Pathways Hospice which supplies care for patents in several Northern Colorado communities; they offer on-call nursing care 24/7, spiritual care, appropriate medical equipment and counseling services. Their care is overseen by physicians trained in Palliative Medicine.

I thought the two overlapped, but didn't know as much as I wanted to much about Palliative Care itself. It's now a subspecialty recognized by the American Board of Medical Specialties and its physicians usually work with a team that may include social workers, chaplains, physical therapists and pharmacists. The patents they care for have severe illness and are usually in a hospital setting, although some may be seen in outpatient clinics.

There are no treatment limitations for this group of patients, but for some the article said, "You would not be surprised if the patent died within 12 months." Other have had recurrent hospital admissions or complex care needs. They may have limited family support or chronic mental illness.

Management of their symptoms: pain, shortness of breath, nausea, agitation and distress, delirium and "failure to thrive" are crucial avenues for the Palliative Care team to address. Those teams have quadrupled in the last ten years.

The link I supplied led me to a directory of hospitals which offer Palliative Care teams. Physicians trained in Palliative Medicine supervise both those teams and Hospice activities.

But it's best to have that talk while you're still able to.

The problem I noted reading the Annals articles was that many patents don't ask their docs about EOL care and, somewhat surprisingly, many physicians don't have any discussion with their patients about this crucial area until the very last moment, if that. Frequently people in the final month of their lives finally have that EOL talk; often they're an inpatient by then and being cared for by someone other than their long-term physician.

My wife and I have discussed what we do and don't want, but I think it's time for me to let my primary care physician know what I've decided. At present I'm basically healthy, but I'm also about to turn seventy-one and you never know.